Cancer Survivorship

Trusted Information to Help Manage Your Care from the American Society of Clinical Oncology ABOUT ASCO Founded in 1964, the American Society of Clinical Oncology (ASCO) is committed to making a world of difference in cancer care. As the world’s leading organization of its kind, ASCO represents more than 40,000 oncology professionals who care for people living with cancer. Through research, education, and promotion of the highest-quality patient care, ASCO works to conquer cancer and create a world where cancer is prevented or cured, and every survivor is healthy. ASCO is supported by its affiliate organization, the Conquer Cancer Foundation. Learn more at www.ASCO.org, explore patient education resources at www.Cancer.Net, and follow us on Facebook, Twitter, LinkedIn, and YouTube.

ABOUT CANCER.NET Cancer.Net provides timely, comprehensive, oncologist-approved information from the American Society of Clinical Oncology (ASCO), with support from the Conquer Cancer Foundation. Cancer.Net brings the expertise and resources of ASCO to people living with cancer and those who care for and about them to help patients and families make informed health care decisions.

ASCO patient education programs are supported by: Cancer Survivorship

Table of Contents

Introduction 2 Support for Coping With Challenges 29 Cancer rehabilitation 29 My Health Care Team 3 Survivorship support groups 34 What Is Survivorship? 4 Other support resources 35 Defining survivorship 4 Making a Difference 36 Follow-Up Care 6 Survivorship Dictionary 38 Watching for recurrence 6 Managing late and long-term side effects 8 Keeping a personal health record 11 ASCO ANSWERS is a collection of oncologist-approved patient education materials developed by ASCO for people with cancer Treatment summary and survivorship care plan 12 and their caregivers.

The ideas and opinions expressed in ASCO Answers: Cancer Life After Treatment: What to Expect 14 Survivorship do not necessarily reflect the opinions of ASCO or the Conquer Cancer Foundation. The information in this guide is not Fear of recurrence 14 intended as medical or legal advice, or as a substitute for consultation with a physician or other licensed health care provider. Patients with A new perspective on your health 16 health-related questions should call or see their physician or other health care provider promptly, and should not disregard professional Personal reflection 18 medical advice, or delay seeking it, because of information encountered in this guide. The mention of any product, service, Changes within families and relationships 19 or treatment in this guide should not be construed as an ASCO endorsement. ASCO is not responsible for any injury or damage to Starting or expanding your family 21 persons or property arising out of or related to any use of ASCO’s patient education materials, or to any errors or omissions. Going back to work 24 Last reviewed Feb. 2017. Managing your finances 27

Cancer Survivorship 1 Introduction

As you finish cancer treatment, you might be wondering: What happens next? The answer is different for every person. Some people return to the lives they were leading before their diagnosis, while the lives of others are significantly changed by their cancer experience. The challenge for every survivor is figuring out how to return to everyday life while adjusting to the effects of the disease and its treatment.

Recognizing these challenges and knowing how and when to ask for support can help you through this time of transition. Using this ASCO Answers guide may also be helpful. This booklet was designed to help survivors and their families and friends prepare for life after cancer treatment. Throughout this guide, you will find questions to ask your doctor, nurse, or another health care professional, as well as plenty of space to write down their answers or other important information. There are also workbook pages you can complete with the help of a member of your health care team to keep track of important information about your diagnosis, cancer treatment, and follow-up care.

However you choose to accurately keep track of this information, it is important for your future health to do so. Don’t be afraid to ask questions or to let your health care team know you don’t know what questions to ask.

2 ASCO Answers My Health Care Team

Primary Care Doctor: ______OTHER SPECIALISTS: Contact Information: ______Name: ______Specialty: ______Contact Information: ______Medical Oncologist: ______Contact Information: ______Name: ______Specialty: ______Radiation Oncologist: ______Contact Information: ______Contact Information: ______Name: ______Surgeon: ______Specialty: ______Contact Information: ______Contact Information: ______

Oncology Nurse: ______Name: ______Contact Information: ______Specialty: ______Contact Information: ______Oncology Social Worker: ______Contact Information: ______Name: ______Specialty: ______Contact Information: ______

Cancer Survivorship 3 What Is Survivorship?

Thanks to advances in medical research, the effectiveness of cancer treatment continues to improve. As a result, the number of people with a history of cancer in the United States has increased dramatically, from 3 million in 1971 to about 14 million today. As more people are surviving cancer, how long a person lives is no longer the only focus. It is also becoming increasingly important to determine how well survivors are able to live after treatment.

Survivorship Defining survivorship means different The word “survivorship” is often used in several things to different ways. One common definition is a different person without cancer people, but it after finishing treatment. Another common often describes definition is the process of living with, through, and the process of beyond cancer. According to this definition, cancer living with, survivorship begins at through, and diagnosis and includes people who continue to receive treatment to either reduce the risk of the cancer beyond cancer. coming back or to manage chronic disease.

No matter how it is defined, survivorship is unique for every person. Everyone has to find his or her own path to navigate the changes and challenges that arise as a result of living with cancer.

MY DEFINITION OF SURVIVORSHIP

______

4 ASCO Answers QUESTIONS TO ASK ABOUT SURVIVORSHIP • Will I need to have any additional treatment after active treatment has finished? • Who will be part of my health care team after active treatment ends, and what will each member do? • Are there groups or online resources you would recommend to help me learn more about survivorship for my specific diagnosis? • Whom should I contact if I have any questions or concerns?

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Cancer Survivorship 5 Follow-Up Care

Cancer care does not always end when active treatment finishes. After cancer treatment has ended, your doctor may continue to monitor your recovery, manage any lingering side effects, and check to make sure the cancer has not returned. Your follow- up care plan may include regular physical examinations and/or medical tests during the coming months and years.

Talk with your doctor or clinician about any concerns you have about your future health. He or she can give you information and tools to help you immediately after cancer treatment has ended and for the long term. This is also a good time to determine who will lead your ongoing medical care. Some survivors continue to see their oncologist, while others see their family doctor or another health care professional. This decision depends on several factors, including the type and stage of the cancer, treatment side effects, health insurance rules, community resources, and your personal preferences.

Participating in follow-up care and keeping a medical support system in place are essential for maintaining both your physical and emotional health. It also helps many survivors feel in control as they transition back into their everyday lives. If you have any concerns about following the recommended follow-up care plan, talk with your doctor or another health care professional. You have been through a lot, and follow-up care can help you stay healthy into the future.

Watching for recurrence

One goal of follow-up care is to check for a recurrence of cancer. A recurrence is when the cancer comes back after treatment. Cancer may recur because small areas of cancer cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms. Depending on the type of cancer, this can happen weeks, months, or even many years after the original cancer was treated.

A recurrence may be local, which means the cancer has come back in the same part of the body where the original cancer was located; regional, which means it has returned in an area near the original location; or distant, which means it has returned in another part of the body. It is important to know that if a cancer recurs far from the location of the original cancer, it is still named for the part of the body where the original cancer began. For example, if a woman treated for breast cancer now has cancer in her liver, doctors will say she has metastatic breast cancer (breast cancer that has spread to another part of the body), not liver cancer.

6 ASCO Answers The chance that a cancer will recur and the most likely timing and location of a recurrence depend on the type of cancer you SIGNS OR SYMPTOMS I SHOULD were originally diagnosed with. Unfortunately, it is impossible REPORT RIGHT AWAY for doctors to know who will experience a recurrence. Still, ______a doctor or clinician familiar with your medical history can give you more personalized information about your risk of ______recurrence and possibly suggest ways to minimize this risk. ______

To help find signs of a potential recurrence, your doctor ______or clinician will ask specific questions about your health and usually do a careful physical examination during your follow-up visits. Some people may also have blood tests or imaging tests. Your follow-up care will be based on the QUESTIONS TO ASK ABOUT CANCER treatment and care recommendations for your specific RECURRENCE diagnosis. In addition, your doctor may tell you to watch for • How likely is it that the cancer will return? specific signs or symptoms of recurrence. • What symptoms may be signs of a potential recurrence? Which should I report to you right If a recurrence is suspected, your doctor may order additional away? Which should I report at my regular follow- diagnostic tests, such as blood and/or urine tests, imaging up visits? tests, or biopsies, to learn as much as possible about the • What can I do to lower my risk of the cancer recurrence. After testing is done, you and your doctor will talk coming back after treatment? about the results and what the next steps should be.

NOTES:

Cancer Survivorship 7 of regular physical activity. Your doctor may also prescribe medications that slow the rate of bone thinning, reduce new bone damage, and may promote bone healing.

Chemobrain. Cancer survivors commonly use the term “chemobrain” to describe difficulty thinking clearly after cancer treatment. However, survivors who do not receive chemotherapy may also report similar symptoms. The effects of chemobrain vary in severity and sometimes make it hard to complete daily activities. People who experience severe problems concentrating, multitasking, or understanding or remembering things should talk with a member of the health care team to learn about ways to manage these issues.

Digestion problems. Chemotherapy, radiation therapy, BILL WIPPERT and surgery may affect how well a person digests food. For Managing late and long-term example, surgery or radiation therapy to the abdominal area side effects can cause scarring, chronic pain, and intestinal problems that affect digestion. Additionally, some survivors may have Most people expect to experience side effects during chronic diarrhea that reduces the body’s ability to absorb treatment. However, it is often surprising to survivors that nutrients. If you experience poor digestion, a dietitian can some side effects may linger after treatment, called long- provide personalized nutrition advice and eating plans. term side effects, or that other side effects may develop These might help you get enough nutrients and may help months or even years later, called late effects. Other health you return to a healthy weight. conditions you may have, such as diabetes or heart disease, may also be made worse by cancer treatment. These long- Endocrine (hormone) system problems. Some types of term effects are specific to certain types of treatment and cancer treatment may affect the endocrine system, which usually develop within a defined time. includes the glands and other organs that are responsible for making hormones and producing eggs or sperm. For Your doctor will be able to tell you if you are at risk for example, men and women who receive radiation therapy to developing any late effects based on the type of cancer you the head and neck area may have lower levels of hormones had, your individual treatment plan, and your overall health. or changes to the thyroid gland. However, some of the potential long-term side effects of cancer treatment are described here. Surgical removal of a woman’s ovaries, chemotherapy, hormonal therapy, and radiation therapy to the pelvic area Bone, joint, and soft tissue problems. Cancer survivors may cause a woman to have lighter and fewer regular who received chemotherapy, steroid medications, or menstrual periods or stop menstruating completely. hormonal therapy may develop thin or weak bones, called Menstrual periods may return for some younger women osteoporosis, or experience joint pain. You can lower your after treatment, but women older than 40 are less likely risk of osteoporosis by avoiding tobacco products, eating to have their menstrual periods return. In some cases, foods rich in calcium and vitamin D, and doing some types although cancer treatment does not immediately cause

8 ASCO Answers menopause, it may still cause menopause to start sooner the heart muscle, problems with the heart’s ability to than normal. Men with prostate cancer who receive pump blood, or heart disease. Talk with your doctor or hormonal therapy or who have their testicles removed may clinician to find out if you should have regular evaluations experience symptoms similar to menopause. for heart issues.

Emotional difficulties. Cancer survivors often experience Lung problems. a range of positive and negative emotions, including Chemotherapy and radiation relief, a sense of gratitude to be alive, fear of recurrence, therapy to the chest may also anger, guilt, depression, anxiety, and isolation. Survivors, damage the lungs, causing caregivers, family, and friends may also experience post- changes in how well the lungs traumatic stress disorder, which is an anxiety disorder that work, thickening of the lining may develop after experiencing an extremely frightening or of the lungs, inflammation, and life-threatening situation. Talk with a nurse, social worker, or difficulty breathing. Cancer another member of your health care team if you are finding survivors who received both it difficult to cope with your emotions or if they begin to chemotherapy and radiation therapy may have a higher risk negatively affect your daily activities or relationships. of lung damage. People with a history of lung disease and older adults may experience additional lung problems.

Lymphedema. Lymphedema is the abnormal buildup of fluid in soft tissue caused by a blockage in the lymphatic system. Most often, lymphedema affects the arms and legs, particularly in people treated for breast cancer or cancers that affect the urinary tract, bladder, kidneys, prostate, testicles, and penis, called genitourinary cancers. However, lymphedema can also occur in other parts of the body, including the breast, below the chin, in the face, and, less Fatigue. Fatigue is a persistent feeling of physical, often, inside the mouth. In some cases, the swelling goes emotional, or mental tiredness or exhaustion. It is the most away on its own as the body heals and normal lymph common side effect of cancer treatment, and some cancer fluid flow resumes. Lymphedema may become chronic survivors experience fatigue for months and sometimes when the lymphatic system can no longer meet the body’s years after finishing treatment. Fatigue can seriously affect demands for fluid drainage. There is no cure for chronic all aspects of a person’s life, from relationships with friends lymphedema; however, there are ways to manage it. and family to the ability to perform at work. It is important to tell your doctor if you are experiencing fatigue because Peripheral neuropathy. Peripheral neuropathy is a type there may be things your health care team can do to help. of nerve damage that develops when the nerves that carry information back and forth between the brain and spinal Heart problems. Heart issues are most often caused cord are damaged. This damage can be caused by radiation by radiation therapy to the chest and specific types of therapy, some types of chemotherapy, or by the cancer chemotherapy. People 65 or older and those who received itself. Depending on which nerves are affected, a person higher doses of chemotherapy have a higher risk of can develop numbness, tingling, pain, muscle weakness, developing heart problems, which may include swelling of constipation, or dizziness. If you develop neuropathy, your

Cancer Survivorship 9 health care team may be able to help treat your symptoms. a feeling of pain that appears to be in the limb that was Many people recover over the course of many months or a removed. To help survivors cope with these side effects and few years. Sometimes, the condition may be more difficult maximize their physical abilities, there are palliative care and to cure and may require long-term management. rehabilitation services available (see page 30).

Secondary cancers. A different type of cancer may If you had a treatment known to cause specific late effects, develop as a late effect of treatment with chemotherapy your doctor may recommend scheduling regular physical and radiation therapy, although this is relatively uncommon. examinations, scans, or blood tests to help identify and Chemotherapy and radiation therapy can also damage manage them. Talk with your doctor or clinician about bone marrow stem cells and increase the chance of which tests are recommended based on your treatment developing either myelodysplasia, which is a blood cancer plan and how often you should have them. You can write where the normal parts of the blood are either not made or down this information on page 13. are abnormal, or acute leukemia.

Other physical effects. Some survivors may have had a part of their body altered or removed as part of treatment. For more information about the possible long-term Survivors of cancers of the bone and soft tissue may effects of cancer treatment, visit experience physical and psychological effects from losing www.cancer.net/lateeffects. all or part of a limb, such as phantom limb pain, which is

QUESTIONS TO ASK ABOUT LATE AND LONG-TERM SIDE EFFECTS • What can be done to manage any side effects that continue after treatment? • What are the most common late and long-term effects that may develop based on my treatment plan? • What should I do if I notice a late effect? • What screening tests do you recommend based on my cancer history? • Are there other doctors or specialists I should see, such as a cardiologist or endocrinologist?

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10 ASCO Answers Keeping a personal health record

As time passes, it can be difficult to remember every detail of your diagnosis and treatment plan. At the same time, this information is very valuable to the doctors and clinicians who will care for you throughout your lifetime. To keep track of the most important information about their diagnosis and treatment, many survivors fill out a cancer treatment summary with the help of a member of their health care team and keep it with their health records.

Many survivors also ask their doctors and clinicians for a For cancer-specific treatment summary forms survivorship care plan or follow-up care plan. This serves and follow-up care plans, visit as a guide for monitoring and taking care of survivors’ www.cancer.net/treatmentsummary. health in the future. This plan is usually based on medical guidelines for a specific diagnosis, as well as a person’s individual needs and preferences. QUESTIONS TO ASK ABOUT YOUR FOLLOW-UP CARE PLAN On pages 12 and 13 you will find everything you need to • Who will be leading my medical care after I finish start creating a cancer treatment summary and survivorship treatment? care plan with the help of the staff at your doctor’s office. • How do you usually provide survivorship care? Keep this information in your personal health record, and • Are there any survivorship clinics, survivorship share it with your current and future health care providers. centers of excellence, or other survivorship Now is also a good time to review your other medical resources you would recommend? documentation, such as your advance directive, to make • How often should I return for a follow-up visit with sure that it reflects your current and long-term wishes. you? With my family doctor? To learn more about putting your health care wishes into • What tests will I need during my follow-up visits? writing, visit www.cancer.net/advancedirectives. • Can you provide me with a summary of my cancer treatment?

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Cancer Survivorship 11 Treatment summary and survivorship care plan

Use these pages to keep track of the major aspects of your cancer treatment and the recommendations for your follow-up care. Please remember, this is not a comprehensive record of your care. Talk with a member of your health care team if you have any questions.

BACKGROUND INFORMATION Family history of cancer:  Yes  No Genetic counseling:  Yes  No Genetic/hereditary risk factor(s) or predisposing conditions: Genetic testing results: ______

DIAGNOSIS Diagnosis date (year): ______Cancer type/subtype/location: ______Stage:  I  II  III  IV  Not applicable

TREATMENT

SURGERY  Yes  No End date (year): ______Surgery date(s) (year): ______SYSTEMIC THERAPY  Yes  No Body area treated: (chemotherapy, hormonal therapy, Surgical procedure/location/findings: immunotherapy, other) ______Start End ______Name of drug ______date date ______

RADIATION THERAPY  Yes  No Symptoms or side effects that have continued after finishing treatment: ¨¨ Buildup of fluid in arms, legs, ¨¨ Low white blood cell count ¨¨ Tingling, numbness, or pain in or neck (lymphedema) (neutropenia) hands/feet (neuropathy) ¨¨ Change in mood or depression ¨¨ Memory or concentration loss ¨¨ Other: ______¨¨ Change in weight ¨¨ Menopausal symptoms, such as ______¨¨ Fatigue irregular or stopped periods or ______¨¨ Heart issues hot flashes ______¨¨ Loss of appetite ¨¨ Sexual problems ¨¨ Low red blood cell count (anemia) ¨¨ Skin changes

12 ASCO Answers FOLLOW-UP CARE PLAN Need for ongoing (adjuvant) treatment for cancer:  Yes  No

Additional treatment name Purpose For how long

SCHEDULE OF FOLLOW-UP VISITS CANCER SURVEILLANCE OR OTHER RECOMMENDED TESTS

Doctor’s name When/how often Test/procedure When/how often

It is important to continue to see your primary care doctor for all general health care recommended for a person of your age, including screening tests for other cancers, when appropriate. You should also tell your doctor about: 1. Anything that could be a brand new symptom 2. Anything that continues to be a persistent symptom 3. Anything you are worried about that might be related to the cancer coming back

Signs or symptoms to tell the doctor about right away: ______

Possible late and long-term effects: ______

What concerns do you have as you transition into survivorship? ¨¨ Emotional and mental health ¨¨ Parenting ¨¨ Other: ______¨¨ Fatigue ¨¨ Physical functioning ______¨¨ Fertility ¨¨ Sexual health ______¨¨ Financial advice or assistance ¨¨ School/work ______¨¨ Insurance ¨¨ Stopping smoking ¨¨ Memory or concentration loss ¨¨ Weight changes Talk with a member of your health care team to find out how you can get help coping with these concerns.

Cancer Survivorship 13 Life After Treatment: What to Expect

In some ways, moving from active treatment to survivorship is one of the most complex aspects of the cancer experience because it is different for every person. After treatment ends, cancer survivors often describe feelings ranging from relief to fear. Some survivors say they appreciate life more and have gained a greater acceptance of themselves. At the same time, other survivors become anxious about their health and uncertain of how to cope with life after treatment, especially when frequent visits to the doctor stop.

During treatment, people feel actively involved in their care, and the relationships they develop with their health care team can provide a PHOTOGRAPH ELSHOUT KAREN sense of support and security. After finishing treatment, the safety net of regular, frequent contact with the health care team ends. Survivors often miss this source of support, especially because new anxieties and challenges may surface at this time, such as physical problems, emotional challenges, fertility concerns, financial issues, and workplace discrimination.

The Fear of recurrence One of the most common concerns survivors have is worrying the cancer will transition to come back. The fear of recurrence is very real and entirely normal. Anxious thoughts like “Has the cancer come back?” and “What will happen if it does?” may survivorship be triggered by the appearance of a headache, cough, or joint stiffness, or it may come up before events like your diagnosis anniversary or follow-up appointments is often and tests. For some survivors, these worries and feelings of uncertainty lead to struggles with depression and anxiety. However, it is important to remember that complex and although you cannot directly control whether the cancer returns, you can control is different how much the fear of recurrence affects your life. WAYS TO COPE for every Living with uncertainty is never easy, so it’s important to remind yourself that fear and anxiety are a normal part of survivorship. Worrying about the cancer coming person. back is usually most intense the first year after treatment, but it generally gets better over time. Here are a few ideas to help you cope with the fear of recurrence.

14 ASCO Answers Talk with your health care team. Although it’s difficult to Take care of yourself. Healthy habits like eating nutritious think about, every survivor needs to prepare themselves for meals, exercising regularly, and getting enough sleep help the possibility that the cancer might come back. However, people feel better both physically and emotionally. You may there is also no need to worry yourself unnecessarily. also feel like you have more control over your health if you That is why getting accurate information about the risk of choose to avoid unhealthy habits, like smoking and drinking recurrence for your type and stage of cancer is extremely alcohol excessively, that have been linked to an increased important. In general, most cancers have a predictable risk of cancer recurrence. pattern of recurrence. No one can predict exactly what will happen in the future, but a health care professional Reduce stress. familiar with your medical history can give you information Finding ways to about the chance the cancer might come back and what manage your stress symptoms to look for. Keeping up with a regular schedule will help lower your of follow-up visits can also provide a sense of control. overall level of anxiety. Try different ways of Recognize your emotions. Many people try to hide or reducing stress to find ignore “negative” feelings like fear and anxiety. However, out what works best for you. This could include spending ignoring them may allow them to intensify and become time with family and friends, rediscovering old hobbies, overwhelming. It often helps to talk about your fears and doing activities you enjoy, taking a walk, meditating, feelings with a trusted friend, family member, or mental enjoying a bath, exercising, or laughing at a funny book or health professional. Or you can try writing down your movie. For more suggestions, see page 17. thoughts in a journal, on a blog, or on social media. Talking and thinking about your concerns can help you explore the Despite your best efforts to cope, you might find yourself issues that underlie your fear. This might include the fear of overwhelmed by fear or anxiety. If this occurs, talk with having to repeat cancer treatment, losing control over your your doctor, clinician, or nurse and consider a referral life, or facing death. for counseling.

NOTES: QUESTIONS TO ASK ABOUT ______COPING WITH FEAR AND ANXIETY ______• What can I do to support my emotional health during my ______transition into survivorship? • What are some healthy ______ways for me to deal with my feelings? ______• What support services are available to me? To my family? ______• What are some things I can do to manage my fears? ______

Cancer Survivorship 15 A new perspective on your health ¨¨Stopping tobacco use Stopping tobacco use is For many people, the transition to survivorship serves the single most important as strong motivation to make positive lifestyle changes. change a person can make Although cultivating healthy habits is a good idea for to lower future cancer risk. anyone, it is especially important for cancer survivors. This Tobacco is linked to an is because, as mentioned previously, survivors are often increased risk of at least at higher risk for developing other health problems as a 15 types of cancer. If you result of their cancer treatment. Healthy behaviors can smoke or use tobacco of any kind, making an effort to help survivors regain or build strength, reduce the severity quit can also improve your recovery and overall health. of side effects, reduce the risk of developing secondary Exposure to secondhand smoke is also dangerous, so cancers or other health issues, and enjoy life more. other members of the household should be encouraged to quit smoking, too. Many resources are available to help, If you decide to make changes to your lifestyle, it is including medication and counseling, and can be found at important to set realistic goals and to recognize that change www.cancer.net/tobacco. does not happen overnight. By setting your mind on accomplishing small, achievable goals each day, you Recommendations or referral: ______will be working toward the larger lifestyle changes you ______want to achieve. Talk with your health care team about ______specific lifestyle changes you might want to pursue. These ______could include: ______

¨¨Reducing alcohol intake In addition to tobacco, alcohol is another substance consistently linked to cancer. In general, experts recommend that women have no more than one alcoholic drink per day and men consume no more than two. One drink is defined as 12 ounces (oz) of beer, 5 oz of wine, or 1.5 oz of 80-proof liquor.

Recommendations or referral: ______

¨¨Eating healthier Choosing to eat meals filled with fresh fruits and vegetables, whole grains, and other unprocessed, low- fat foods may help cancer survivors regain strength after treatment. Nutritious eating can also reduce the risk of heart

16 ASCO Answers disease, high blood pressure, of exercises you do to your specific needs and limitations. A obesity, and diabetes. In addition, certified health and fitness professional can help you develop recent research suggests that a plan based on your doctor’s or clinician’s recommendations, some cancer survivors who but this is not typically covered by insurance. make healthy food choices may have a lower risk of recurrence Recommendations or referral: ______and live longer. Although most ______of these studies have focused ______on breast cancer, researchers ______have also noted these benefits in colon cancer and prostate ______cancer survivors who eat healthy diets. A dietitian can help you understand your nutritional needs, make healthy eating ¨¨Managing stress choices, and create tasty and appropriate meal plans. Being diagnosed with a serious illness like cancer is Recommendations or referral: ______very stressful, and everyday ______life often adds to this stress. ______Learning how to manage ______stress is extremely important ______for your recovery. Experiencing high levels of stress for a long time has been linked to health problems and a lower ¨¨Exercising regularly quality of life. A big step in reducing stress can be made The American College of Sports Medicine recommends through small changes in your life, such as learning to say that survivors avoid inactivity. Start slow and build up. Aim “no” to tasks you don’t have the time or energy to complete, to do at least 150 minutes of moderate aerobic exercise, like doing your most important tasks first, and getting help with walking, every week and resistance (strength) training two potentially challenging issues such as finances. or three days per week. Other ways to manage stress include exercise, social Research is starting to link exercise with improved quality of activities, support groups, mindfulness, acupuncture, yoga, life for cancer survivors. Regular physical activity can help tai chi, massage, and other relaxation techniques. Many survivors reduce anxiety, depression, and fatigue; improve relaxation techniques can be learned in a few sessions with a self-esteem; increase feelings of optimism; improve heart counselor or in a class. health; reach and maintain a healthy weight; and boost muscle strength and endurance. Exercise also reduces Recommendations or referral: ______the risk of high blood pressure, heart disease, stroke, ______and diabetes. In addition, some studies have shown that ______exercising regularly may help prevent the recurrence of ______breast, colon, prostate, and ovarian cancers. ______

Remember, even a small amount of physical activity is ¨¨Other: ______helpful. Talk with your doctor or clinician before you start an ______exercise program because you may need to adapt the types ______

Cancer Survivorship 17 Personal reflection hospitals and cancer centers have chaplains who can give support to people of all faiths, as well as those who Many survivors struggle with don’t consider themselves religious at all. Local cancer questions of why they had organizations may also be able to help you find religious or cancer and why they survived spiritual leaders in your community who have experience when others have not. Some helping cancer survivors. survivors may find themselves re-examining long-held views Keeping a journal or blogging. Writing down your or beliefs as they try to make thoughts and feelings starts a process of self-discovery and, sense of their experience and for some, of spiritual development. Allowing yourself to find new meaning in life. Although every person creates think every day or every week about your feelings is a way meaning from their experiences in their own way, other to get to know yourself better and to understand what gives cancer survivors have said they have found answers to meaning to your life now. Because blogging is much more some of these difficult questions by: public than journaling, it may also connect you with, and help inspire, other people who are going through a Re-evaluating old patterns and priorities. Some similar situation. survivors look at their cancer experience as a “wakeup call” and begin to ask questions like: Are my current roles in my Finding new ways to support emotional well-being. family or as a friend fulfilling? Does my job make me happy Some survivors choose to begin new activities, such as yoga, or am I just doing what other people expect me to do? meditation, drawing, and music therapy, that help support What are the most important things in my life now? their spiritual and emotional health and make them feel less fearful and anxious. Other people become more active on Reaching out for spiritual support. For some, spirituality social media as a way to gather information and cope. and faith are a source of comfort and guidance. Many

QUESTIONS TO ASK ABOUT REFLECTION • How can I manage feelings like guilt, confusion, or anger? • Are there religious or spiritual organizations in my community that provide specialized support or services for cancer survivors? • Where else can I find emotional or spiritual support?

NOTES:

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18 ASCO Answers Changes within families and pack every minute of every relationships day full of love and fun puts a lot of unnecessary stress and Cancer often changes the way you relate to your family, pressure on you, your partner, partner, and friends, and the way they relate to you. When and your children. These active treatment is over, some survivors need different attempts to overfill time may types of support than they had before. Some friends may be exhausting for everyone become closer, while others may distance themselves. and may do the opposite Families can become overprotective or may have exhausted of what you are trying to their ability to be supportive. Relationship problems that accomplish. Instead, think about choosing more relaxed may have been ignored before a cancer diagnosis can be and manageable ways of connecting that will give you brought to the surface. Everyone is changed by the cancer quality time and the chance to enjoy shared experiences, experience in ways they may not even be aware of. like watching a favorite movie together or going for a walk.

PARENTING AND FAMILY LIFE Fear of recurrence may be another strong factor in the Living with and beyond cancer often makes people rethink way survivors parent. Worrying about having to go through the way they live their lives, including the way they parent. treatment again and being separated from your children When active treatment ends, many survivors find that or not surviving cancer the next time can negatively affect parenting after cancer presents unique challenges. your relationship with your children. Some parents pull away, while others may become overprotective. The best For months or even way forward is to focus on communicating openly and years, the demands of honestly with your family about your feelings and the cancer and treatment chance the cancer might come back and encouraging may have made it difficult them to share their feelings and concerns with you. to spend time with your children. The guilt of SEXUALITY AND INTIMACY constantly being away In general, although people are less interested in sex while from home or unavailable having cancer treatment and at times of crisis, interest in can trigger a strong sex usually improves during recovery and survivorship. desire to just be a “normal parent,” or sometimes even a However, some survivors may experience changes in their “super parent,” to make up for that lost time. However, long- sexual function or sex drive caused by cancer and cancer term side effects of cancer treatment, such as memory treatment. loss, difficulty concentrating, pain, fatigue, or permanent disabilities, can make parenting even more demanding Some treatments, even those not directed at the pelvic and frustrating. It is important not to compare yourself to area or groin, can cause physical side effects that interfere other parents during this time. As you adjust to life after with sexual function. But even other physical changes not treatment, you can only do your best and shouldn’t be hard directly related to sexual function may affect the way a on yourself because of what you might see as limitations. person feels about his or her body and his or her physical attractiveness, such as losing a testicle or a breast, needing Sometimes, making every minute after treatment with your a colostomy or another type of ostomy, losing weight family “count” becomes a top priority. However, trying to or hair, or having scars or skin changes. Even a person

Cancer Survivorship 19 whose body was not outwardly changed by cancer may Good communication involves talking openly and honestly feel differently about his or her body. All of these changes about your thoughts, feelings, and fears with someone who affect self-image, self-confidence, and a person’s sense of listens and supports you. Good communication includes attractiveness. not only sharing your own thoughts and feelings, but also listening to the other person’s thoughts and feelings and Even though it may feel accepting them without criticism or blame. By establishing awkward or uncomfortable, open and ongoing communication with your spouse or it is important to discuss partner, you both can better adapt to the changes cancer what you are experiencing has caused in your lives as well as in your relationship. with a member of your health care team. If your doctor or clinician does QUESTIONS TO ASK ABOUT RELATIONSHIPS not seem comfortable or • How can I be mindful of the ways cancer could experienced with these concerns, ask for a referral to a affect the way I parent? social worker or to someone else on the team who may be • If I have difficulty talking to my children, who better equipped to provide help and support. can help? • Could my treatment plan affect my sex life? If so, Intimacy is very closely connected to your feelings about how and for how long? your relationship as well as your feelings about yourself. • Can you refer me to another health care Therefore, finding a counselor who has experience working professional who can help facilitate discussions with people with cancer and talking through some of these with my friends and family? issues can help both you and your partner.

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20 ASCO Answers Starting or expanding your family to be checked to be sure pregnancy will be safe. You may be referred to an obstetrician who specializes in caring for Deciding when and whether to have a baby is often a women during and shortly after a pregnancy when they difficult decision for survivors. There are a number of have other health concerns. emotional and physical factors that both survivors and their spouses/partners need to consider before starting or For male survivors, there are no specific guidelines for adding to their families. trying to have a child after finishing cancer treatment. However, doctors may recommend waiting before trying to In general, becoming pregnant after cancer treatment is have a child, with the exact amount of time depending on a considered safe for both the mother and the baby, and number of factors. pregnancy does not appear to increase a woman’s risk of recurrence. However, the exact amount of time female DEALING WITH INFERTILITY survivors should wait before trying to become pregnant Some couples find that cancer treatment has made it depends on the type and stage of cancer, the type of difficult or impossible for them to have children, leading to treatment the woman received, any need for ongoing intense grief and anger. It is important to find support as you treatment, and her age and personal preferences. cope with these changes and losses. Your doctor, clinician, social worker, or counselor may also be able to help you If you are a female survivor, you also should talk with look into other ways to start or expand your family. your doctor or clinician about whether your body can safely handle pregnancy. Sometimes, cancer treatments Assisted reproduction. Cancer treatment and age may damage specific areas of the body, such as the heart or reduce the number of eggs in a woman’s ovaries, called lungs. Before becoming pregnant, these organs may need the ovarian reserve, making it difficult for her to become

Cancer Survivorship 21 Donor sperm. If a man who had cancer treatment did not store his sperm before starting treatment, he can use sperm donated to a sperm bank by another man to become a father. In most cases, the sperm, which is screened for infectious diseases, is donated anonymously. However, sperm banks usually record the physical traits of the donor.

Testicular sperm extraction and epididymal sperm extraction. For men who do not have mature sperm in their semen, this procedure involves removing a small amount of tissue from the testicle. This tissue is examined under a microscope to find mature sperm, which can be frozen or used immediately for IVF.

Donor embryos. Donor embryos usually come from couples who had an infertility treatment that resulted in extra pregnant. If blood tests and ultrasounds show this has embryos. As with occurred, a fertility specialist may be able to use assisted egg donation, the reproduction techniques, such as in vitro fertilization (IVF). embryos are then During this process, a woman’s eggs or donor eggs (see transferred into the below) are fertilized with sperm outside the body. One or uterus of the woman more of the fertilized eggs (embryos) are later transferred who wants a child, into the woman’s body to develop into a baby. For the and the woman will have to take hormones before and after pregnancy to be successful, the woman’s uterus must be the embryos are inserted. Although a couple or individual healthy, and she will have to take hormones before and who uses a donated embryo will not be genetically related after the procedure. to the child, the procedure allows a woman with a healthy uterus to experience pregnancy. By law, the couple Donor eggs. Women with a low ovarian reserve may be donating the embryos must have the same tests that are able to use another woman’s eggs to become pregnant. The required for the egg donation process. donated eggs are fertilized in a laboratory with the sperm of the woman’s partner or of a donor using IVF techniques. Surrogacy and gestational carriers. If a woman is not able to carry a child, or if becoming pregnant could put By law, all egg donors, whether they are a family member, her health at risk, having another woman carry the baby friend, anonymous donor, or known donor from an agency, during pregnancy is an option. This is called surrogacy if the are screened for psychological issues, medical conditions, woman who will carry the child becomes pregnant through and potential genetic diseases before they are allowed to artificial insemination with the father’s sperm. If an embryo donate eggs. created from the mother’s egg and the father’s sperm

22 ASCO Answers is implanted into the woman, she is called a gestational agencies allow cancer survivors to adopt, some require a carrier. Surrogacy and gestational carrier laws are different letter from a doctor certifying good health, and others in each state, so it is important to consult an attorney if you may require a certain amount of time to pass after you are considering this option. have completed treatment for cancer. If the adoption is taking place outside the United States, there may also Adoption. Adoption is the permanent, legal transfer of be international rules related to the health of the parental rights of a child from the biological parent to adoptive parents. another couple or individual. Although most adoption

For more information about having a child after cancer, visit www.cancer.net/survivorship/life-after-cancer.

QUESTIONS TO ASK ABOUT HAVING CHILDREN • Could cancer treatment affect my ability to become pregnant or have children? • How long should I wait before trying to become pregnant or father a child? • How will trying to have a child affect my follow-up care plan? • Where can I find support for coping with fertility issues? • Whom should I contact if I need help talking with my spouse or partner about fertility issues?

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Cancer Survivorship 23 Going back to work

For many people, returning to a full-time work schedule is a sign both to themselves and the world that they are getting back to “normal.” Working can provide opportunities to reconnect with colleagues and friends, focus on something other than cancer, get involved in interesting and challenging projects, and start settling back into a regular routine and lifestyle. However, transitioning back into the workforce may feel overwhelming at times.

Every survivor’s work situation is different. Many people with cancer who took time off for treatment return to and contact members of your health care team. These work afterwards, while many others may have worked are all considered reasonable accommodations under the throughout treatment. Still others may not be able to return Americans with Disabilities Act (ADA). to work because of long-term side effects. Your decisions about work will likely depend on your financial resources, Before granting a reasonable accommodation, your employer health insurance, the type of work you do, and the nature may request documentation that verifies your limitations, such of your recovery. as fatigue, chronic pain, and cognitive difficulties, which are classified as disabilities under the ADA. However, employers PLANNING YOUR RETURN are not allowed to ask for your medical records. An employer For survivors who cut back on their may deny a request if the accommodation would cause an hours or stopped working, the first “undue hardship,” such as being too difficult or expensive to step is to talk with your doctor or implement. However, an employer is required to determine clinician about whether you are if there is an easier or less costly accommodation that can be ready to return to work. The timing made to meet your needs. depends on the type of cancer and treatment you had and the type of job you perform. If your Other things to consider to make your transition back to job is stressful or physically demanding, you may need to work smoother include: wait longer before returning to work. Ongoing treatment or • Planning to take small breaks throughout the day to help side effects, such as fatigue, may also cause delays. maintain your energy level • Using lists and reminders or setting meeting and task Once you know it’s okay to return to work, a good next step alarms on your office e-mail system is to set up a telephone or in-person meeting with your • Scheduling frequent meetings with your manager to talk human resources department to discuss transition plans. about the transition and make any necessary changes Ask whether your employer has a formal “return-to-work” or adjustments or disability management program. You may also want to discuss the possibility of flexible work arrangements, such TALKING WITH COWORKERS as part-time hours, partial or full-time telecommuting, job It’s your decision when and how to tell coworkers about sharing, reassignment to another position, leave time for your cancer experience, if you even decide to talk about it doctor visits, or periodic work breaks to take medications at all. However, if you have been absent for a while or your

24 ASCO Answers physical appearance has changed, some of your coworkers promotion withheld, being overlooked for consideration in may have questions. It is important to decide what you a new position, and finding a lack of flexibility in response want to tell people in advance and how you plan to do it. to requests for time off for medical appointments. You may want to have private conversations with a few close coworkers. Or you may find it easier to send an e-mail It is important to understand that there are laws and or make an announcement at a staff meeting. Consider regulations that prohibit discrimination, such as the ADA, your work culture, what feels right to you, and your need and you can take legal action if necessary. However, it is for privacy versus your need for accommodations and often better to take steps to try to prevent discrimination support. You can also ask your manager, a close coworker, when you return to work after cancer treatment by: or a human resources professional to help you decide if, • Catching up on new projects or developments that when, and how to tell others about your cancer. occurred while you were gone • Refreshing job skills, if necessary, by reviewing past work It always helps to keep assignments or attending classes or workshops your explanation simple • Seeking counseling from a professional about making the and let people know how transition back to work your return to work will • Getting advice and tips from other cancer survivors affect them. For example, through a support group you might consider • Asking your doctor to write a letter stating your ability to saying: “I’ve completed return to work treatment for cancer, and I’m currently doing well. It’s good to be back at work. Just so you know, I will be here 20 hours per week for the next 4 weeks, and I will return full time after that. In the meantime, Joe Smith will be covering projects A and B.”

Some employers and coworkers may not respond well. Their reactions usually have to do with past experiences or a lack of familiarity with cancer. However, most survivors find that their coworkers are supportive and caring. People FINDING A NEW JOB often take your lead; if you are comfortable talking about For some survivors, the cancer experience reshapes their your experience with cancer, they will likely feel the same. career priorities and causes them to question whether they still want to continue on their current career path. Other DEALING WITH DISCRIMINATION survivors are unable to return to their previous jobs and Although many survivors can be as productive as they were must take their careers in a new direction. No matter what before treatment, some find they are treated differently or the reason, the thought of applying and interviewing for a unfairly. For example, some employers and colleagues may new job may make you uneasy. assume that a person’s productivity will decrease or that performance will fall below the company’s expectations. When applying and interviewing for a new job, some cancer Other types of discrimination may include receiving survivors worry about how they will explain gaps in their a demotion for no clear reason, having an earned job work history or their reasons for leaving positions they

Cancer Survivorship 25 had before their cancer diagnosis or treatment. If you are and tips on networking with potential employers and concerned about explaining gaps in employment, it may be can be good resources for learning about potential job helpful to talk with a career counselor or social worker. He or openings. In addition, books and career counselors can she can teach you interviewing skills and help you organize provide guidance on how to network effectively. Taking your résumé by experience and skills instead of by date. proactive steps can boost your self-esteem and help you stay positive while you are looking for employment. During the interview process, an employer, by law, cannot ask questions about your health or about a medical condition, such as whether you have had cancer. If you QUESTIONS TO ASK ABOUT choose to tell a potential employer about your cancer EMPLOYMENT CONCERNS history, the employer is still not allowed, by law, to ask • If I am nervous or feel overwhelmed about you any questions about the cancer, the treatment you returning to work, who can help me? received, or your recovery. The employer also must keep • If I have difficulty talking with my coworkers about any information you share about your history of cancer or my cancer experience, what are some coping any other medical information confidential. An employer is strategies I can try? allowed to ask questions related to the specific duties and • What information do I need to give my employer responsibilities of the job, such as whether you can lift a when I return to work? What information can certain number of pounds or travel. remain private? • If I have on-the-job difficulties when I return Some job seekers find encouragement in support groups, after treatment, who can help me understand my which help them connect with other people who are legal rights? looking for work. These groups also provide suggestions

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26 ASCO Answers Managing your finances Organize bills and rank them in order of priority. As you open your bills, organize them into categories such as The costs of cancer care can be high. Even people medical bills, household bills, credit card statements, taxes, with reliable health insurance can be left with bills that etc. Then figure out how much money you have in your quickly add up. Often, survivors have already lost income budget to put toward payments. Your rent or mortgage, because they weren’t able to work as much or at all during utilities, taxes, and medical expenses should be at the top of treatment, making it difficult to pay for both medical and your bill-paying list. household expenses. This financial stress may increase if you are unable to return to work after finishing treatment. Make an appeal. If your insurance company has denied Here are a few things to consider as you cope with the payment for a service or treatment, you have the right to financial impact of cancer: ask them to conduct a full and fair review of its decision. If the company still denies payment after considering your Investigate other sources of income if you are unable appeal, the Affordable Care Act allows you to have an to return to work. If a disability or other long-term side independent review organization decide whether to uphold effect of cancer treatment has made it impossible for you to or overturn the plan’s decision. return to work, there are a number of potential sources of income to consider, including long-term disability insurance, Ask if the insurance payment can be considered life insurance policies, and retirement plans. Some cancer “payment in full.” If you are unable to pay for tests, survivors apply for Social Security Disability Insurance or procedures, and other treatments that were not completely Supplemental Security Income. To learn more about these covered by your insurance plan, making this request to the federal programs, including eligibility requirements, call hospital, cancer center, or doctor’s office is often more 800-772-1213 or visit www.ssa.gov/disability. successful than people expect. Some hospitals have funds to offset medical services that aren’t fully covered by insurance.

Cancer Survivorship 27 Talk to your creditors. Usually if you call and explain Contact an organization that offers help for cancer your situation, your creditors or a credit counseling survivors facing financial challenges. There are many service will work with you to create a payment plan. Most national and local organizations that offer financial companies would prefer receiving small payments, even $10 information, advice, and support for cancer survivors. a month, than nothing at all. Give the person you talk to a Contact them directly to learn more about specific telephone number and the hours that you can be reached if programs and services, including eligibility criteria. there are any problems. Also ask them to communicate with you in writing.

Ask for help. If you can’t face the stack of bills that has For more advice and suggestions for managing collected, ask a trusted friend or family member to help you the costs of cancer care, visit organize them and plan your budget. You can also talk with www.cancer.net/managingcostofcare. an oncology social worker or patient navigator about your financial concerns. They can help connect you with financial assistance programs and other sources of financial aid.

QUESTIONS TO ASK ABOUT YOUR FINANCES • How many more medical bills should I expect to receive related to my active treatment period? • If my insurance claim is denied, who can help me file an appeal? • If I am having difficulty paying my medical bills, are there organizations that can help? • What resources and support are available to me if I am unable to return to work after finishing treatment? • If I am having trouble paying for basic items, like food or heat, due to the cost of my cancer treatment, are there organizations that can help? • Where can I get free or low-cost personal items after treatment, such as medical supplies, if needed? • Who can help me understand what my insurance will cover in terms of my recommended survivorship care plan, such as follow-up exams and medical tests?

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28 ASCO Answers Support for Coping With Challenges

Every cancer survivor has individual concerns and challenges, some of which may not have been addressed specifically in this booklet. With any challenge, though, a good first step is being able to recognize your fears and talk about them. Effective coping requires understanding the challenge you are facing, thinking through solutions, asking for and allowing the support of others, and feeling comfortable with the course of action you choose.

Talking with your doctor, clinician, nurse, or another member of your health care team about any concerns you may have is an important part of your follow-up care, especially if something you are experiencing is holding you back from enjoying your life. Just as there were support options during treatment, there is also help for you during your transition into survivorship and beyond.

Cancer rehabilitation Effective

Cancer rehabilitation helps people who have had cancer function at their best coping requires physically, socially, mentally, and professionally. The goal of rehabilitation is to help people regain control over many aspects of their lives and remain as understanding independent and productive as possible. Rehabilitation is valuable for anyone the challenge, living with cancer, those recovering from cancer treatment, and their families by: • Improving physical strength to help offset any limitations caused by cancer and thinking cancer treatment • Helping the person become more independent and less reliant on caregivers through • Helping the person adjust to any losses caused by cancer and cancer treatment solutions, and • Reducing sleep problems • Lowering the number of hospitalizations asking for support.

Cancer Survivorship 29 CANCER REHABILITATION SERVICES ¨¨Clinical trials for survivors Many cancer centers and hospitals offer a variety of These research studies focus on addressing a person’s cancer rehabilitation services to their patients and are quality of life after cancer treatment. able to help identify local resources. Survivors and family members are encouraged to be active, informed partners Recommendations or referral: ______in the rehabilitation process and to talk with a nurse, social ______worker, or patient educator about the services they are ______interested in. These may include: ______¨¨Certified health and fitness programs These programs help survivors build strength, endurance, ¨¨Family counseling and mobility. When meeting with a family, a counselor listens Recommendations or referral: ______objectively to all participants ______and helps identify how ______specific thoughts and ______behaviors could be ______contributing to conflict. Family members learn new ways to support each other during stressful times.

Recommendations or referral: ______

¨¨Genetic counseling A trained genetic counselor will help you and your family understand your risk of developing an inherited medical condition (a condition passed from parent to child), such as a type of cancer, based on your personal and family medical history. The genetic counselor also explains the available genetic tests; the cancer screening, prevention, and treatment options; and serves as an ongoing resource for support.

Recommendations or referral: ______

30 ASCO Answers ¨¨Home care services ¨¨Nutritional planning Home care consists of a range of professional health care A registered dietitian can and supportive services delivered in the home, including provide guidance on a help with daily activities, such as eating, drinking, dressing, survivor’s specific nutritional bathing, using the toilet, cooking, and basic housekeeping. needs, including meal planning, to regain and Recommendations or referral: ______maintain a healthy weight ______and lifestyle. ______Recommendations or referral: ______

¨Öccupational therapy Occupational therapy focuses on helping people with an illness, injury, or disability develop the skills they need to ¨Ïndividual counseling accomplish daily tasks, such as self-care and work, so they This provides one-on-one interaction with a counselor to can regain or maintain their independence. talk about troubling circumstances, thoughts, and feelings. The counselor will listen attentively, express caring concern, Recommendations or referral: ______ask questions, and offer feedback. ______Recommendations or referral: ______¨Öncology social worker consultation ______Oncology social workers provide education, information services, discharge and home care planning services, and ¨¨Marriage/couples therapy referrals to community resources. They also help survivors The goal of this type of counseling is to help couples adjust to life after treatment by providing counseling on respond to challenges and associated emotions in healthy ways to cope with a variety of post-treatment issues, ways. It focuses on improving relationships and resolving including practical, financial, and work-related challenges. conflict. Recommendations or referral: ______Recommendations or referral: ______

Cancer Survivorship 31 ¨¨Pain management ¨¨Recreational Nearly all cancer-related pain can be successfully treated therapy or managed. After a thorough medical assessment, your Recreational doctor or clinician will work with you to develop a pain therapists work with management plan that may include medication, physical survivors to reduce and occupational therapy, relaxation, distraction, hypnosis, stress, anxiety, and biofeedback, nutritional support, and acupuncture. Some depression through hospitals have pain specialists to help patients and survivors music, games, with pain that is difficult to control. exercise, and arts and crafts. Recommendations or referral: ______Recommendations or referral: ______

Learn more about pain at www.cancer.net/pain or by reading a copy of ASCO Answers Managing Cancer-Related Pain.

¨¨Physical therapy A physical therapist will evaluate any nerve, muscle, or fitness problems that make it difficult for a person to function well on a daily basis and then develop ¨¨Survivor matching programs a care plan. This plan Also called buddy programs, these groups connect usually includes exercises survivors with similar diagnoses, situations, or concerns to and other recommendations that improve a person’s provide one-on-one peer support. physical functioning and help prevent further difficulties. Recommendations or referral: ______Recommendations or referral: ______

32 ASCO Answers ¨¨Tobacco cessation ¨¨Vocational (career) counseling programs Career counselors help survivors find or keep a satisfying These programs provide job, especially if their cancer experience has reshaped their support and resources for career priorities and caused them to question whether they quitting tobacco use. A variety fit with their current job. Career counselors can also provide of treatments and resources are guidance on how to network effectively, teach interviewing available for people who want to skills, and help organize résumés by experience and skills, stop using tobacco, including medications and counseling. instead of by date. Your chances of successfully quitting are better if you follow a comprehensive plan and build a support network. Recommendations or referral: ______Recommendations or referral: ______

For more information about support resources Learn more about stopping tobacco use by visiting and links to national organizations, online support www.cancer.net/tobacco or by reading a copy of communities, and age-specific resources, visit Stopping Tobacco Use After a Cancer Diagnosis. www.cancer.net/support.

QUESTIONS TO ASK ABOUT CANCER REHABILITATION • Would I benefit from cancer rehabilitation services? If so, what kinds of services? • Who can help me understand what my insurance will cover in terms of cancer rehabilitation services? • What are other ways I can stay as healthy as possible after treatment?

NOTES: ______

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Cancer Survivorship 33 Survivorship support groups pain and other long-term side effects, how to deal with the fear of recurrence, and how to communicate with health As you move from active treatment into survivorship, care providers and family members. These informational know that you are not alone. You have family, friends, support groups are usually led by a professional facilitator and community resources there to help you manage the and focus on providing cancer-related information and emotional, practical, and financial issues that arise as you education. These groups often invite speakers who can transition back into “normal” life. Still, some survivors find it provide expert information. is helpful to talk with people who know what they are going through from first-hand experience. Finding the right support group depends on your needs and personality. Some people may need emotional support, Support groups offer the chance for people to talk about while others may prefer an emphasis on information and their experiences with other survivors. Group members education. Some people join a group that is open to all can share feelings and experiences that seem too strange individuals with cancer, while others may prefer a group or too difficult to share with family and friends. The group that is more specialized, such as for those with a specific experience, which is often led by a trained counselor, type of cancer (like breast cancer or prostate cancer) or a social worker, or psychologist, often creates a sense of group that is dedicated to post-treatment survivors. belonging that helps each person feel less alone and more understood. Sharing feelings and fears with others who In recent years, online support groups have become more understand may also help reduce stress. popular. These groups may be a particularly good option for people who live in rural areas or for those without easy In addition to sharing feelings and experiences, support access to transportation. An online support group may group members sometimes discuss practical information, allow people with rarer types of cancer to communicate such as what to expect after treatment, how to manage with others with the same type of cancer. Online support

34 ASCO Answers groups may also be a good choice for those who do not • Talking with a friend feel comfortable sharing their experiences face-to-face. • Individual counseling or therapy • Asking a doctor, clinician, or nurse specific questions Online communities or social networking sites can connect • Talking with someone who is a part of your spiritual or you with other survivors who share common interests religious community or who are in a situation similar to yours. Many cancer • Visiting the learning resource center at the hospital or advocacy organizations have online support groups as well. cancer center where you received treatment • Focusing on other enjoyable activities

Other support resources Caregivers play an important role in the care of Some people with cancer may not be interested in joining people with cancer. Learn more about caregiving a support group or may find that support groups are not by visiting www.cancer.net/caregiving or by helpful for them. If this is true for you, there are other ways reading a copy of the ASCO Answers Guide to find support that you may want to consider, such as: to Caregiving.

NOTES: QUESTIONS TO ASK ABOUT FINDING SUPPORT ______• What post-treatment ______support services are available to me? To my ______family? • Where can I find resources ______for a child? For a teenager? For a young adult? For an ______older adult? ______• Does this hospital or cancer center have a learning ______resource center? If so, where is it located? ______• Can you recommend a social worker or other ______professional who can ______help me find additional survivorship support ______services?

Cancer Survivorship 35 Making a Difference

Positive feelings often arise during the transition to survivorship. Many survivors express a strong desire to “give something back” because of the care and kindness they received. Many realize they have a lot of valuable experience that can help others facing cancer. If you are interested in giving back, think about your own interests, strengths, and areas of expertise and how various organizations could use them to help further their mission.

There are a number of ways for survivors to make an important difference in someone else’s life and often make a positive difference in their own life at the same time. Many survivors say sharing their time makes them feel good, helps build new friendships, and widens their network of support. These opportunities include:

Service and support. Through these programs, survivors provide information Volunteering and help people with cancer find ways to cope. Volunteer hotline counselors are trained to give easy-to-understand information over the phone and lend support makes an by listening to patients’ concerns. Some support groups are organized and run by important cancer survivors. There are also cancer support programs you can get involved in that offer emotional and practical support to patients and their families by difference providing needed items, such as wigs, scarves, and books. in someone Awareness and education. Through workshops and presentations at schools, workplaces, health fairs, and on the internet, cancer organizations raise else's life awareness about this disease and educate people about cancer prevention and screening. Many also provide tips about maintaining a healthy lifestyle and while making follow-up care after treatment ends. Survivors can help by teaching sessions a positive about cancer at their workplace, community center, or place of worship; providing office services and help with event planning and logistics for local difference in cancer organizations; or joining committees that plan new educational programs. your own. Fundraising. Cancer organizations usually need to raise money to maintain services and programs, such as free cancer screenings, transportation assistance and financial aid for patients and their families, outreach programs, education, and research. Survivors often participate in fundraising activities, such as races

36 ASCO Answers and other sporting events, luncheons or dinners, plays or Survivors also advocate for cancer research by supporting concerts, fashion shows, and auctions. clinical trials. Individual patient advocates can join a clinical trial cooperative group sponsored by the National Cancer Advocacy. Being an advocate means supporting and Institute, review research grants, assist in the development of speaking in favor of a specific cause. Survivors help lead clinical trial protocols and informed consent forms, participate local and even national efforts to develop or change cancer in community outreach and education regarding clinical policy issues, such as access to health care and funding research, help reduce barriers to participation in clinical for cancer research. By working with cancer organizations, research, and recruit patients to participate in specific advocates can support legislation that helps people with clinical trials. cancer and their families and speak out about issues affecting people with cancer.

To learn more about advocacy and other ways to volunteer as a survivor, visit www.cancer.net/advocacy.

QUESTIONS TO ASK ABOUT VOLUNTEERING AND ADVOCACY • How can I find cancer-related organizations to volunteer with? • What are other ways I can support people living with cancer? • How can I get involved in cancer research?

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Cancer Survivorship 37 Survivorship Dictionary

Active treatment: The period when a person is having Depression: Defined as having a low mood and/or feeling surgery, chemotherapy, radiation therapy, or other numb consistently for more than two weeks, every day and treatment to slow, stop, or eliminate the cancer. much of the day.

Acute survivorship: A term describing the period when Extended survivorship: A term describing the period a person is diagnosed with cancer and/or receiving active when a person has just completed active treatment, usually treatment. measured in months.

Americans with Disabilities Act (ADA): A federal Fertility: Ability for women to become pregnant or have (national) law that protects people with disabilities from children. For men, fertility refers to the ability to provide discrimination. It requires employers to make reasonable healthy sperm. accommodations in the workplace for qualified individuals with a disability. Learn more at www.ada.gov. Follow-up care plan: A personalized schedule of follow- up examinations and tests that a doctor recommends Anxiety: Feelings of nervousness, fear, apprehension, after the active treatment period. This may include regular and worry. physical examinations and/or medical tests to monitor the person’s recovery for the coming months and years. This Case manager: A health care professional who helps may also be called a survivorship care plan; it is often used coordinate a person’s medical care before, during, and in conjunction with a treatment summary. after treatment. At a medical center, a case manager may provide a wide range of services, including managing Hormonal therapy: Treatment that removes or blocks treatment plans, coordinating health insurance approvals, hormones to destroy or slow the growth of cancer cells. and locating support services. Insurance companies also Also called endocrine therapy. employ case managers. Imaging test: A procedure that creates pictures of internal Chemotherapy: The use of drugs to destroy cancer cells. body parts, tissues, or organs to make a diagnosis, plan treatment, check whether treatment is working, observe a Clinical trial: A research study that involves volunteers. disease over time, or check for a recurrence. Many clinical trials test new approaches to treatment and/or prevention to find out whether they are safe, effective, and Laboratory test: A procedure that evaluates a sample of possibly better than the treatment doctors currently use. blood, urine, or other substance from the body to make a diagnosis, guide treatment, check whether treatment is working, observe a disease over time, or check for a recurrence.

38 ASCO Answers Late effects: Side effects of cancer or its treatment that Physiatrist: A medical doctor who treats injuries and occur months or years after the active treatment period illnesses that affect how a person moves, including the has ended. treatment of pain. Also called a rehabilitation specialist.

Learning resource center: A location in a hospital Prognosis: Chance of recovery; a prediction of the or cancer center where patients and families can get outcome of a disease. information about health-related topics and learn about support resources. Also called a health or hospital library. Primary cancer: The original (first) cancer with which a person was diagnosed. The primary site is where the Long-term side effects: Side effects that linger after cancer began. cancer treatment has ended. Psychiatrist: A medical doctor who has special training in Metastasis: Cancer that has spread to other parts of the preventing, diagnosing, and treating mental, emotional, and body from the place where it started. behavioral problems.

Oncologist: A doctor who specializes in treating cancer. Psychologist: A specialist who can talk with patients and The main types include medical, surgical, radiation, their families about emotional and personal matters and gynecologic, and pediatric oncologists. can help them make decisions.

Oncology nurse: A nurse who specializes in caring for Quality of life: An overall sense of well-being and people with cancer. satisfaction with life.

Palliative care: Any form of treatment that concentrates Radiation therapy: The use of high-energy x-rays or other on reducing a person’s symptoms or treatment-related side particles to destroy cancer cells. Also called radiotherapy. effects, improving quality of life, and supporting patients and their families. Also called supportive care. Recurrence: Cancer that has returned after a period during which the cancer could not be detected. Local recurrence Patient navigator: A person, often a nurse or social means the cancer has come back in the same general worker, who helps guide survivors, families, and caregivers area where the original cancer was located. Regional through the health care system by offering services such recurrence refers to cancer that has come back in the as arranging financial support, coordinating care among lymph nodes or other tissues near the original cancer site. several doctors, and providing emotional support. Distant recurrence refers to cancer that has come back and has spread to other parts of the body, usually by traveling Patient Protection and Affordable Care Act: Often called through the lymphatic system or bloodstream. “health care reform,” this is a 2010 federal law that changed certain rules regarding health insurance coverage in the Referral: Recommendation provided by a doctor to get United States. Learn more at www.HealthCare.gov. help or information from another health care professional, specialist, or resource. Insurance companies often require a referral before they will cover visits to other health care professionals or specialists.

Cancer Survivorship 39 Rehabilitation: Services and resources that help a person Stage: A way of describing where the cancer is located, with cancer obtain the best physical, social, psychological, if or where it has spread, and whether it is affecting other and work-related functioning during and after cancer parts of the body. treatment. The goal of rehabilitation is to help people regain control over many aspects of their lives and remain as Surgery: The removal of cancerous tissue from the body independent and productive as possible. during an operation.

Remission: Period in which the signs and symptoms Survivorship: This term means different things to different of cancer have disappeared. This can be temporary or people. Common definitions include having no disease permanent. Also called “no evidence of disease” or NED. after the completion of treatment and the process of living with, through, and beyond cancer. Risk: The likelihood of an event. Targeted treatment: Treatment that targets specific genes, Secondary cancer: A new primary cancer (a different type proteins, or other molecules that contribute to cancer of cancer) that develops after treatment for the first type growth and survival. of cancer. Treatment summary: A written summary of the therapy(ies) Side effect: An undesirable result of treatment, such as that a person had during the active treatment period. This is fatigue, diarrhea, or sexual problems. often used in conjunction with a follow-up care plan to help monitor a survivor’s long-term health. Social worker: A professional who helps people cope with everyday tasks and challenges before, during, and after treatment. Social workers may work for a hospital, a service agency, or a local government and help address financial problems, explain insurance benefits, provide access to counseling, and more.

For more definitions of common cancer-related terms, visit www.cancer.net/cancerbasics.

40 ASCO Answers Looking for Other Patient Information Resources?

Cancer.Net offers a variety of guides, booklets, and fact sheets to help patients learn more about their disease and treatment.

ASCO ANSWERS GUIDES ASCO ANSWERS BOOKLETS ASCO Answers Guides feature comprehensive information ASCO Answers Booklets provide in-depth, practical guidance about the diagnosis, treatment, side effects, and psychosocial on specific topics in cancer care. Learn about: effects of a specific cancer type, as well as practical • Advanced Cancer Care Planning information for patients and families. Topics include: • Managing Cancer-Related Pain • Breast Cancer • Managing the Cost of Cancer Care • Colorectal Cancer • Managing Your Weight After a Cancer Diagnosis • Non-Small Cell Lung Cancer • Palliative Care • Small Cell Lung Cancer • Stopping Tobacco Use After a Cancer Diagnosis • Prostate Cancer • Survivorship • Caregiving For Patients and Caregivers: If you are interested in ASCO ANSWERS FACT SHEETS additional educational materials, visit www.cancer.net/ ASCO Answers Fact Sheets provide a one-page (front and ascoanswers to find all of our available materials in back) introduction to a specific type of cancer or cancer- electronic format. related topic. Each includes an overview, illustration, terms to know, and questions to ask the health care For Oncology Professionals: Bulk quantities are available team. Cancer.Net has more than 65 fact sheets available for purchase. Bundled versions are also available for (including some in Spanish), covering different cancer purchase. Bundles include guides for oncology professionals types, diagnosis and treatment, and side effects. Some and patient guides. Available bundles cover survivorship, available titles are: weight management, and tobacco cessation. Visit • Kidney Cancer www.cancer.net/estore or call 1-888-273-3508 to place • Acute Lymphocytic Leukemia your order. To request free promotional materials for your • Appetite Loss practice, please send an email to [email protected]. • Understanding Chemotherapy

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